Children’s Palliative Care ‘Poor’

Too few seriously ill children are receiving palliative care in their final weeks, a study suggests. A team from Great Ormond Street Hospital found the number dying in intensive care has increased over the last decade.

{mosimage}The Journal of Medical Ethics study suggests guidance on managing symptoms, rather than being given invasive care, is not being followed enough. But experts said intensive care could be the right kind of assistance.

In 1997, the Royal College of Paediatrics and Child Health published guidance on when it might be recommended that active treatment or life support could be withdrawn, meaning children could be cared for on a general ward or at home

The researchers wanted to see how often this was put into practice. They analysed data on deaths in the hospital of children aged up to 18 from 1997 to 2004. During the seven years, 1,127 children died, over half of whom (58%) were younger than 12 months.

Congenital malformations, perinatal disease, cardiovascular disorders, and cancers formed the bulk of the causes of death. There were no major changes to overall admission rates to the hospital or to intensive care over the study period, nor did overall death rates vary. But the numbers of children dying in intensive care rose from around 80% in 1997 to almost 91% in 2004.

Among children who died in intensive care, the numbers of those who had been admitted from wards within the hospital almost doubled from just under 15% to 25%. Infants with congenital problems or perinatal disease were more than twice as likely to die in intensive care, while older children with cancer were more than six times as likely to die in other hospital wards.

The researchers, led by paediatric intensive care specialist Padmanabhan Ramnarayan, said the data suggested the Royal College’s guidance was not being followed. He said: “Parental and societal expectations regarding children’s good health and long life spans prompts them to seek aggressive curative care despite the benefits of such a course being unclear.”

But he said “For the individual child and parents, the experience of death is more unpleasant when it occurs within the circumstances of intensive care, multiple painful procedures, sedation, paralysis and other complications if intensive care stay.

“One solution is having a palliative care team which isn’t just involved in allowing children to die at home, but who are involved early on in hospital care.”

But Professor Terrence Stephenson, vice-president of the Royal College of Paediatrics and Child Health, said going to intensive care did not have to entail invasive treatments.

“There is an assumption that intensive care involves aggressive management, but it could be that intensive care is able to provide the required kind of palliative care.

“Or it may be that it is distressing for parents to have their children managed on a general ward at the end of their life which is also caring for children who are recovering.” He added the children treated at Great Ormond Street were not typical of those treated at most hospitals.